Forward or Back? Some Personal Notes on Why the Affordable Care Act Matters

By Jacob Molyneux, senior editor/blog editor

So today the U.S. Supreme Court did something a little surprising in upholding the individual mandate provision in the Affordable Care Act (here’s the text of the full decision). It was the right thing to do, given judicial precedent, but it still comes as a surprise that Chief Justice Roberts was the swing vote rather than Kennedy, or that they actually did this. Justice Roberts must have looked to his conscience and seen how history would judge him. Or it’s nice to think so.

This is good for many reasons: those under 26 on their parents’ plans can now stay there. A bunch of money earmarked for nurse education will not suddenly disappear. Health care exchanges holding insurance companies to minimum standards will be implemented. Accountable care organizations can continue to experiment in an effort to replace the disastrously expensive fee-for-service model with one tied more closely to outcomes. And a great deal more.

But now we should ask ourselves: Do we go forward or back? This is the real question when it comes to the American health care system. Going back isn’t an option, though many are sure to go on pretending it is (the Republicans will make repealing the Affordable Care Act a centerpiece of their campaign promises, no doubt, a rallying cry against the Democrats). Ignoring reality is something humans are very good at, though it doesn’t always end well, if history is a guide.

And in truth it will take an increasingly powerful act of will to ignore the medical bankruptcies, medical tourism for affordable care to Mexico and further afield, the emergency rooms crowded with the uninsured seeking care for minor and major ailments, the yearly statistics that tell us our health care system is the most expensive per capita and yet has outcomes worse than those of many far poorer countries.

Still, some will surely rise to the occasion as they intone mantras about the free market’s ability to solve all problems for the good of all. Meanwhile the one percent who own an increasingly large percentage of the nation’s wealth will simply avert their eyes, able to afford the best surgeons, concierge care, home visits, brand name drugs.

This matters to me for personal (among other) reasons. At age 27 I left my job working with abused and neglected children and their caregivers and went to graduate school in North Carolina. Living on a tight budget, I opted out of the university’s health care coverage. That is, I chose not to purchase health care . . . it wasn’t mandated, and I didn’t need it.

That fall, as I immersed myself in following my creative dream, I found myself losing touch with reality. My clothes hung off me, I had a thirst that drove me nearly insane (at one point I sat in a bathtub all afternoon sucking on ice cubes just to stop myself from buying and guzzling random selections of liquids at the store—Yoo-hoo, of all things, and orange juice, and Guinness, seltzer, Coke, milk, chocolate milk, etc., etc.). I felt disoriented. One day I saw double as I drove my used pickup truck along the lush parkway. When I went out for a run I found myself barely able to complete a mile, let alone my usual five or six.

As must be clear by now, my immune system had decided to attack my own body, wiping out the insulin-producing cells in my body. It was nothing I did, nothing I could have averted. I was strong, young, healthy, fit. And now, after some blood tests, I learned I had type 1 diabetes and would need to be my own nurse for the rest of my life, checking my blood glucose level many times a day, injecting myself before meals and when the blood glucose level was too high. From then on in I’d need to be attentive to every permutation of exercise, diet, medication as I tried to achieve the “tight” glucose control that would keep me from losing limbs, sight, nerve endings, organs, and eventually my life.

But at the time, in the midst of the initial confusion and struggles, I had a very simple problem on top of all the others: how do I afford this meter to test my blood glucose level, the strips that cost almost a dollar each, the syringes, the two types of insulin, an endocrinologist to monitor the condition? I borrowed some money from an older relative and scraped by. I was lucky enough to have that option. I applied for free medications from a state program. Until I got on my feet a bit more, I spent a lot of time being anxious, broke, and a little scared, skimping on test strips when it was dangerous to do so, regretful that I had decided to go back to graduate school for something unlikely to make me wealthy.

Later still, working as an adjunct university lecturer and a freelance editor, I found what it’s like to be denied access to affordable coverage on the open market. That was upsetting, and it’s one of the things the ACA intends to remedy. Now I’m lucky to get insurance through my job, but the medications are still expensive. I now have two other autoimmune conditions that require medications and specialists. I’m fine, overall, high functioning, but much of my “extra” money is used for medications, tests, physician visits. Without being part of a group plan at work, I’d never be able to afford insurance and all of the medications I need. A full-time job at a large company is a requirement.

So I know why health care reform matters, even if the ACA doesn’t go nearly far enough to control costs, even if it still cedes too much power to the marketplace, to drug companies and insurance companies. Maybe in the end the system will still collapse and it will become clear we need a single-payer system like they have in many countries.

The fact is, health care is nonnegotiable for all of us in the end. You may not have a chronic condition starting in your teens or 20s, but you’re sure to get sick someday. You may not ever get cancer or heart disease, though there’s a pretty good chance you might. You may never break a thumb or a leg, develop a painful skin condition, have a baby, get strep throat.

Those who have been so busy protecting your “freedom” not to have to buy insurance seem unable to see the problems we are facing with our health care system, problems that the necessarily complex Affordable Care Act attempted to address.

Consider a health insurance industry that has been largely unregulated, able to increase premiums massively each year, present their rules in riddles even a PhD won’t help you solve, deny coverage to whoever they want and drop whoever they want from coverage. Not to mention a growing segment of the population (nearly 50 million) without any insurance at all, the costs of health care in an impossible upward spiral . . .

Let’s not keep trying to go back. That door is closed. There’s work to do.

9 Comments

Karen, that belief makes sense to me. Thanks for clarifying that. I imagine, should one choose to do so, one might interpret our own “right to the pursuit of happiness” to include, in this era of effective but often expensive treatments for many common conditions,the right to baseline health care.

Karen Kelly
July 12, 2012 at 10:29 pm

Jacob, as you noted other industrialized nations have far better health care outcomes than the US and spend far less. One of the differences between those countries and the US—those countries do commit to the idea that health care, like K-12 education, is a basic human right, not a privilege! Thanks for sharing your story.

I appreciate all your comments. Thank you. And to the person who reminds us that “healthcare isn’t a right,” I’d simply say: no one said it was, but I want to live in a society where we do our best to help people out in a reasonable way. That’s why I vote for politicians who will go to bat in support of a world I’d like to see, a place of greater compassion rather than more profits for a few at the expense of the many. This approach to health care isn’t really producing the best outcomes anyway, if you look at the data on how much we spend per person in our current unregulated system and the fact that we have worse outcomes than many other far less wealthy countries. It’s a no-brainer, if you tear yourself away from the party line for a moment.–Jacob

Susan Hassmiller
July 11, 2012 at 3:35 pm

Really moving account of why health care reform for all is so important! thanks for sharing your personal story Jacob.

Jacob, thank you for sharing your personal story, which is all to familiar to me as an ambulatory care nurse. Yours typifies that of many young adult who require expensive medications and monthly infusions to manage chronic health conditions. Affordable health care enables them to work, pay taxes, and pursue lives beyond disability. These patients are not asking for free health care, just affordable health care. In the words of George Bailey from the American classic film, It’s a Wonderful Life: “That makes them better citizens now, doesn’t it, Mr. Potter?”

Karen Kelly
June 28, 2012 at 8:03 pm

Our nation was founded on the idea that we have the rights to life, liberty, and the pursuit of happiness. Without health, which requires health care, life, liberty, and the pursuit of happiness are just empty concepts. The US is the only industrialized nation that doesn’t support the idea that health care, like K-12 education, is a basic human right. Because of this failure to embrace the right to health care, we spend twice as much per capita as other industrialized countries and have some health care outcomes that compete with third world and former Soviet Union nations. Our infant mortality rate, for example, is an embarrassment.

Thanks Jacob! I have a great friend who is a nurse and also a Type 1 diabetic. She has spent the past 2 years saving up supplies so she can take a year off from `big company´ and teach Englsh in South America. It´s been a dream of hers and only delayed by the expense of her healthcare needs. I´m very proud of my country today, all the way from Australia! But, as you say, there is much work to do. Great post!

RN97865
June 28, 2012 at 6:24 pm

Healthcare isn’t a right. You aren’t entitled to it.

Karen Kelly
June 28, 2012 at 12:03 pm

Logic triumphs! Health care reform will continue to move forward!

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